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"I found out I had HIV when I was pregnant for the first time, in 2009. In Kyrgyzstan, all women are tested during pregnancy twice, once early on and once later in the pregnancy. They say it is your choice whether to get tested, but if you don't then you cannot get maternity services. The result was a shock but I wanted to have my child.

My medical card has a code on it which shows that I have HIV to anyone who knows the codes... as soon as people in the hospital saw that code, they didn't want to help me

I sat down with my own maternity doctor and with the AIDS Centre and made a plan with them about the delivery and how it would be managed, because there is a lot of stigma associated with HIV in Kyrgyzstan. So, my doctor understood the issues. But when I started to give birth, my doctor was not available. So that meant I had to go to the maternity hospital and be seen by whoever was there. My medical card has a code on it which shows that I have HIV to anyone who knows the codes. There was no question about whether I disclosed my status – it was already there, on my medical card. And as soon as people in the hospital saw that code, they didn't want to help me. They started to find all kinds of reasons for rejecting me, for not being able to help with the delivery, but it was only because they were afraid of my HIV. Even the management of the hospital didn't want to accept me.

When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen

Eventually, I managed to contact the Head of the AIDS Centre and they intervened with the Head of the hospital to let me stay there, because I was about to give birth. But even then and despite their intervention, I was put in an isolation room. When people came to help with the birth, they were dressed up with gloves and suits and masks like spacemen. They were obviously very reluctant to touch me or even the baby. They left us in isolation the whole time I was there recovering, even when the baby was crying. It was awful. Afterwards I went back to that hospital with people from the AIDS Centre. We did some training with them and I talked about my experience and why it was wrong. It was very successful and it has led to further training sessions in other maternity hospitals, so I hope that some good has come of it. But I know, from later experiences and from other women, that there is still a long way to go to get rid of stigma in our maternity system.

They left us in isolation the whole time I was there recovering, even when the baby was crying. It was awful

"

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A reflection paper dangerously lacking reflection on reaching the agreed target of HIV, viral hepatitis and TB elimination by 2030

The paper is arguably far too little, too late to live up to the expectations on SDG 3 to ensure healthy lives and promote the wellbeing for all at all ages. This is even more so when it comes to stigmatized and marginalized communities who continue to be disproportionally affected by HIV/AIDS, TB and viral hepatitis epidemics. By now we have the knowledge, the tools and the experience to make these epidemics history and to ensure that no-one is left behind. However, political leadership is lacking or waning.

Health and sustainability ambitions betrayed as European Commission’s mandate comes to an end: 3 scenarios for action that don’t live up to citizens’ health needs

Brussels (February 20, 2019) – As civil society and community-led organisations working across Europe to address the needs of persons affected by viral hepatitis, HIV and/or tuberculosis, we wish to respond to the approach suggested by the European Commission in its Refection Paper from the perspective of the agreed target to end these epidemics by 2030.

We support the focus on “horizontal enablers” to ensure a sustainable and inclusive future for populations across the EU and beyond. We recognize that the EU has strived towards more cohesive and inclusive societies building on the principles of respect for fundamental rights, democracy and the rule of law. The European project has brought improvements to the well-being of its population. Yet, as noted by the Commission, environmental degradation and social disparities are great between and within countries. We agree with the Commission’s recognition that the EU has the capacity to address these gaps and that it does “not have the luxury of time”. The Commission underlines “the important opportunity for the EU to show leadership and blaze the trail for others to follow”.

In that light, the Commission paper is arguably too little, too late, though better than nothing at all. We are concerned at the complacency towards the hepatitis, HIV and tuberculosis epidemic signaled by the reflection paper and the message it sends to the public and policy-makers.

The Commission uses death rates due to these infections as the only indicator of progress towards goal of elimination. Elimination of an epidemic is not realized by only reducing mortality. We also question the reliability of the data regarding viral hepatitis within the time frame presented. The paper only mentions prevention in passing and only for non-communicable diseases. This is misleading given new infections rates, prevailing inequalities in access to prevention, treatment and care and underfunding of the response.

EU countries have committed themselves to eliminate the hepatitis, HIV and tuberculosis (amongst others) epidemics by 2030. It is feasible. By now we have the knowledge, the tools and the experience to make these epidemics history as significant public health threats and to ensure that no-one is left behind. However, political leadership is lacking or waning. There is insufficient funding for rights-based and evidence-based programmes, there is unequal access to needed health services, persisting stigma and discrimination in health care settings, punitive and restrictive laws that bar the way to health for many sub-populations across the EU (migrants, and undocumented migrants, people in detention/prison, sex workers, gay men and other men who have sex with men, trans persons, ethnic minorities, people using drugs, homeless persons). The EU will not reach the SDGs target and will miss the opportunity to show its added value if it sticks to the current approach.

To be a trailblazer and reap the significant medium to long-term human and financial gains that elimination of these epidemics entails, the EU needs to:

• Increase its focus on social dimensions of sustainable development to ensure a reduction in social inequalities, sustainable and fairer health systems and improving health outcomes for all. • Adopt an ambitious agenda, implement a strong and budgeted action plan that is aligned with SDGs commitment and targets. • Develop a plan that is coordinated with member states and monitored via a sound indicator set aligned with the goal of elimination. This would allow a more accurate interpretation of the desired direction for EU action. The EC could consider data collected by ECDC to provide a proper assessment of performance (e.g. infection rates, treatment coverage, prevention budget, regulatory frameworks). It could integrate ECDC and WHO reporting. • Improve coherence between EU policies and actions. • Collaborate with third countries to catch up.

EU Civil Society Forum on HIV/AIDS, tuberculosis and viral hepatitis is an informal advisory body established by the European Commission DG SANTE to facilitate the participation of HIV/AIDS, viral hepatitis and tuberculosis NGOs and networks in European policy development and programme implementation.

Report shows growing HIV, TB and malaria crisis in Venezuela

Venezuela faces a complex humanitarian emergency that is expanding and cascading throughout the Latin American region and around the globe. New research from ICASO and ACCSI reveal that health, economic,…

PARADIGM – Patients Active in Research and Dialogues for an Improved Generation of Medicines

Project aims: To provide a framework that allows structured, meaningful, sustainable and ethical patient engagement throughout three key decision-making points of the development of medicinal products: (i) the research priority…

HIV Outcomes – Beyond Viral Suppression

Initiative aims: HIV Outcomes, is a multi-stakeholder initiative developing and communicating expert, evidence based consensus recommendations for policy makers focused on the provision and delivery of high quality of care…